Can Tibolone exacerbate endo when on Decapeptyl injections?

[thebird1]

Evening all, I've posted a couple of times in the last few weeks as seem to feel worse on Tibolone and trying to make sense of it all!

I've been on Tibolone for three weeks. I've just had my 6th Decapeptyl injection. I'm in a lot of discomfort where I'd usually have endo pain ( bladder, cervix, urethra. I'm really confused as to why I'm getting the discomfort if on injections! I didn't have the discomfort before starting the Tibolone. It's also making me feel really flat.

I'm trying to decide whether to stop the Tibolone. I don't know whether it'll settle. Should I still be on Decapeptyl injections if not taking Tibolone? I have DIE and surgery ( pelvic clearance and excision of endometriosis)is likely to be next September 2025 so have a while to wait x

Thank you in advance x

[1Poppy1234]

I had headaches on tibolone but it settled but I'm unsure as to whether I got any benefits from it. The decapeptyl I found sometimes didn't work as well as others. I was sure one jab wasn't done correctly too. I was advised that tibolone could be just stopped so you could try stopping it to see if things settle. You could ask your GP to push your case if you aren't getting any reprieve. Good luck. 🥰

[thebird1 in reply to 1Poppy1234]

Thank you for responding x Think I'll stop the Tibolone and see as you say! Think I need to go back to GP x

[1Poppy1234 in reply to thebird1]

I understand that the oestrogen in tibolone is synthetic so not really supposed to affect your endometriosis. Although I was fine on it didn't see an improvement. Also having the mirena in didn't seem to help me very much either and the opinions are very mixed on it done consultants want to take it out others want to introduce it! I would go to the GP and push your case sometimes different GPs are better than others.

[Sunset-lady]

Have you had the coil before and been OK? Tibilone is synthetic progestin and a drug that stimulates estrogen receptors. Many women with endometriosis don't do well with progestin (I'm one of them) so this might be why you feel ill and flat. You'd probably be better off with utrogestan which is progesterone and natural so your body tolerates it more easily. And a small amount of estrogen. Getting the balance right is crucial. You'll be estrogen dominant at present which is why you have endometriosis so you dont want to take much estrogen. I also suggest eating a raw carrot each day to help your body get rid of estrogen. To help you you not feel flat try B vits (complex and B6 and B1). Magnesium glycinate is also great x

[thebird1 in reply to Sunset-lady]

Thank you so much for responding, that's really helpful. x I've tolerated the coil although if I'm honest looking back I've not felt as perky since I've been on it.....7 years. I just put that down to perimenopause!!! I'm nearly 48 x I've never been able to tolerate the contraceptive pill or mini pill. The mini pill ( progesterone only) made me really flat so I came off it. Before I started on Decapeptyl injections I'd tried one pump of estrogen gel ( plus coil) which led to horrendous pain and haematuria!!

I tried utrogestan and I think I tolerated that a bit better ( alongside the coil) but was only on it for a month as came off it at the same time as the estrogen gel. I'm wondering if I should have the coil removed and go on utrogestan instead as I'm now on injections. It's all a bit of a pickle really!!!

I started taking Magnesium glycerate in August and B vits too. I've slept better since x

Thank goodness for this group x

[Sunset-lady]

I agree. I'd have the coil removed and go on utrogestan continuous regime probably 200mg and one pump of estrogen and see how you go. Obviously talk to your GP but I'd read Lara Bridens stuff first too so that you know more about it. Progestins are very different to progesterone and if you have endo you'll probably be estrogen dominant. You will get your period back though so you need to prepare yourself for this. I'm 51 and have been navigating peri menopause for 10 years now. I'm on zoladex for hemorrhaging.

[thebird1 in reply to Sunset-lady]

Sunset lady.....just to clarify, does Zoladex not stop periods then? It's the same as Decapeptyl isn't it? It puts you in medical menopause?I've not had a period for 7 years since coil fitted! They've just told me I also have adenomyosis too!

[Sunset-lady]

Sorry, yes you shouldn't get your period as you are on the injection although you may bleed a bit. I still bleed on zoladex some days.

[thebird1 in reply to Sunset-lady]

Marvellous! Thank you x

[LawsTra]

I was taken off Tibilone and put onto HRT gel, so much better and easier to adjust dosage to suit my symptoms. I don't think the decapeptyl injection has made any difference for me that I notice, but this is different for everybody.

[thebird1 in reply to LawsTra]

Hi, thanks for responding. Can I ask how long you've been on Decapeptyl. Also, do you have additional progesterone/ progestin ? Coil? Utrogestan to balance out the estrogen?Thank you

[LawsTra in reply to thebird1]

I had my first Decapeptyl injection in August 2024. I also have mirena coil fitted 3 yrs ago. Had my follow up with endo consultant last week, what a waste of time. After 19 yrs and no effective treatment provided until 3 injections this year, they say there is nothing else they can do as I am menopausal now and nature will take its course and symptoms will reduce.

[thebird1 in reply to LawsTra]

Thank you for your response. How old are you? I'll be 48 in March. I'm on the list for full pelvic clearance so shocked that they're not treating you further!

[NebbyBaj]

I took tibolone but only lasted 4wks. Thought I needed to persist but I felt awful & had excruciating pain in the pelvic bone. Stopped taking it & the pain went but I didn’t cope well on the prostap either.

[thebird1 in reply to NebbyBaj]

I had pain in pelvic bone too! Just really felt it exacerbated endo pain!

[Pugmum80]

Hi, I have just spoken to my Endo surgeon today about this. If on decapeptyl for more than 6 months have to have some form of HRT to stop any issues with bone density and heart disease. Maybe try an alternative HRT?

[thebird1 in reply to Pugmum80]

ThanksI've now left one email and three phone messages to Consultant's secretary to ask for advice and I've had no response. I've had my seventh injection today. I saw GP last week who said she didn't know what to do and would write to Consultant!